After years of treatment, families grapple with the idea of returning to normal. Unfortunately, most parents don't really know what "normal" is any longer. Parents realize that returning to the carefree pre-cancer days is unrealistic, that life has changed. The constant interaction with medical personnel is ending, and a new phase is beginning in which routines do not revolve around caring for a sick child, giving medicines, and keeping clinic appointments. While it is true that the blissful ignorance of the days prior to cancer are gone forever, a different life—one often enriched by friends and experiences of the cancer years—begins.
It just seems like I can't leave it behind. If he gets diarrhea, I worry that it's a tumor He has a bad skin rash now, and I keep thinking that it's cancer-related. My husband has terrible skin, so I know it's genetic, but there's a little part of my mind that keeps trying to connect it to leukemia. My son has been going to the playground; he's getting strong; he has rosy cheeks; he's just beautiful. When he has bruises on his legs, I automatically think his platelets are down. But when I look at the other kids, I realize that it's normal for active kids to have bruises on their knees. It's really hard to get used to. I still wake up at night, and the irrational side comes out. I'm just having a hard time letting go of it. I mean, I panicked when his feet were hurting, only to discover that his shoes were too small.
We're a year off treatment, and I really don't think about relapse very often. I do occasionally find myself studying her to see if she looks pale, or I worry when she seems tired or her behavior is bad. Usually, I'm feeling safer. But honestly, I don't think any of us will ever go back to the days when we just assumed that our kids would grow up, that the parents would die first; that sense of security is probably gone forever.
Shawn's six months off treatment, and he's just like a flower beginning to bloom. He's so happy and I try to be happy with him. I try very hard to put worries about the future out of my mind, because I feel that those thoughts will rob me of just being able to enjoy Shawn.
Chemo is such a horrible thing to do to your child, but at least you are actively fighting the beast, so when it ends you feel a bit like you're flying without a net. You get so used to this bizarre new "normal" of treatments and blood tests and doctor visits, and then suddenly you stop, but you don't get the old normal back.
I think it's probably best to approach the end of treatment as a chance to see your child get his healthy color and energy back, and an opportunity to create and explore a new "normal" for your family that is richer and more meaningful than the one you left behind. It's also really nice to finally have the chance to reconnect with your spouse (and other children) and heal all the relationships that have taken a beating during the stressful treatment period.
As for me, for perhaps a year after Joseph's treatment I existed in a dazed mix of emotions and thoughts. I was fearful of relapse, thrilled that Joseph had survived the cancer and the treatment, concerned about what late effects lay around the corner, all tempered with a warm and thankful feeling that I knew I would never, EVER take my kids or my good life for granted anymore or sweat the small stuff the way I used to. There were days I felt like I didn't want to crawl out from under the bed, and other days I couldn't stop singing and being silly.
I think off treatment is a lot like on treatment—you just have to take it one day at a time.
Normal is a moving target—different for every person and family. No one can tell you what your normal will be. Normal is what keeps the family alive and planning and moving together to face their individual and collective futures. Normal is what feels right for the family now; what feels right for you now.
Many parents and children like to give back to the cancer community in some way. Helping others, for many people, is a satisfying way to reach out or bring closure to the active phase of cancer treatment. Helping others can create something enormously meaningful out of personal tragedy. Some examples of reaching out are:
• I requested that the clinic and local pediatricians refer newly diagnosed families to me if the parents wanted someone to talk to. I remembered how impossible it was to go to meetings in the first few months, and how desperately I needed to talk to someone who had already traveled the same road.
• We started a Boy Scout project to keep the toy box full at the clinic.
• My children are counselors at the camp for kids with cancer.
• After my son died, I gave up my parish to begin work as a hospice chaplain.
• We organized a walk to raise funds for the Ronald McDonald House.
• We (a group of parents of children with leukemia) requested and were granted a conference with the oncology staff to share our thoughts on ways to improve pain management and communication between parents and staff. It was very well-received.
• We circulated a petition among parents to request increased hospital funding for psychosocial support staff. We presented it to the director of the Hematology/ Oncology service.
• I started a support group and organized meetings, conferences, and picnics, and I write a quarterly newsletter.
• We held a bone marrow donor drive.
• I give platelets and blood regularly.
• I took all of our leftover Hickman line supplies to camp and gave them to a family who needed them.
The possibilities are endless. Parents use whatever talents they have to help others, from designing head coverings to writing newsletters.
I am the administrator of several online support groups for parents of children with cancer We have over 600 participants from sixteen countries all over the world. Some of the members' children have been cured for years, some are newly diagnosed, and some of the children have died. We've become a family. It's important to me to remain involved in the fight against childhood cancer There are so many others that are following behind in our footsteps. Perhaps showing that we've been there, too, yet we're still standing, might help another mom or dad.
An equally healthy response to ending treatment for cancer is to put it behind you. Many families, after years of struggles, just want to enjoy a sense of normalcy. They don't want constant reminders of cancer, and feel that it's not good for children to be reminded of those hard times.
I realized that it was time to put it behind us when I watched my two children playing house one day. There was only one adult and one child in the family. I asked what happened to the rest of the family and they both said, "Cancer, they died." I didn't want them to have any more cancer in their lives. They had had enough. I know people who worry all the time about the leukemia returning, and it is not healthy for them or their children. I decided to get out of the cancer mode and back to being my usual upbeat self. I feel that we are finally back to normal, and it's a good place to be.
Parents and children need to talk to one another, examine their emotions, decide what course they want to chart, and work together toward a healthy life after cancer.
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